Sometimes the unspoken truth, is louder than the stories we speak.
As Friday night rolls around, for many it's a breath of fresh air.
The weekend has arrived. Nowadays it's time spent lounging, ordering take out, family night or running very few errands. For us, it's a plasma infusion night. 10 days have past and here we are again, this time on a Friday night.
We begin prepping, the moment Ava walks in the door from school, with no time to spare.
The whole process takes about 4 hours. Here’s a look at the breakdown.
Step 1. Lidocaine cream applied on 2 areas and covered to numb the area.
Step 2. Set a timer for 1.5 hours
Step 3. When the alarm sounds, take pain and prevention meds.
Step 4. Set another timer- now for 20 minutes
Step 5. While the timer is on, I prep her "IgG " aka Immunoglobulin G called Hizentra.
I prep everything from plasma, syringes and more.
What is Immunoglobulin G?
IgG is the most common type of antibody in your blood and other body fluids. These antibodies protect you against infection by "remembering" which germs you've been exposed to before. If those germs come back, your immune system knows to attack them. Your doctor can test for IgG to figure out whether you've been infected by certain kinds of bacteria or virus.
(Ava's body produces very little IgG and the IgG that her body does produce is defective. There are 400 different kinds of Primary Immune Deficiency Disease. Ava’s PI is called, “Predominant Antibody Defect.” Due to her lack of IgG produced, Ava’s body does not work like yours and mine and makes her at much higher risks for infection. That’s why she receives plasma infusions to protect her.)
You can read more about Ava’s history and how we got here on this website.
Step 6. Remove lidocaine patches.
Step 7. Get Ava on board mentally. This could take anywhere from minutes to hours.
Step 8. Clean and sanitize the area for Ava to inject two needles into her belly.
(Ava has injected her own needles since the very first infusion).
Step 9. We cover and keep this area protected.
Step 10. We start the plasma machine. Ava's infusion lasts 1 hour and 45 mins.
(Her infusion is mostly uncomfortable, but can be very painful at times. Since donors like you and me supply her with IgG sometimes her body reacts differently to each infusion. She can walk around, play video games or relax during infusions. She is normally very tired since her body is working hard during this.)
Step 11. Infusion has ended. Remove the needles. Clean up swollen tissue area and bandage.
Step 12. Rest. As the antibodies dissolve into her tissue and get started protecting Ava.
Ava is usually very tired, tender and has recently been experiencing intense pain following her infusion. It's unfortunate, but seems as though her AMPS is starting to interfere with her IgG infusions. 😔
This whole process takes place after a full day of in person schooling.
On day 9 leading up to her infusion Ava sometimes experiences fatigue, since she's running low on antibodies. Her immune system is weakened and her pace is slower. Per doctor's orders she is to be given more time to do ALL THINGS including school work and physical activity. Thankfully Ava has rarely allowed the "low she hits'' get the best of her.
A Tangled Web.
There are parts of Ava's Journey many cannot relate too or fully understand.
Kinda like, until you've walked that walk yourself. I didn't understand ANY of this until it directly impacted my child and our family. The Primary Immune Deficiency Disease and AMPS diagnosis occurred only months apart, we were quickly educated, or more like thrown into it. 🙃
Being Ava's Momma, I experience her journey alongside from a different perspective. I feel my daughter's silent struggles. The silent struggles in addition to being an hormonal preteen. Not just physically and emotionally because of her disability, but mentally due to others' ignorance in getting educated in her journey. Taking the time to understand what is happening inside Ava's body, what she deals with on a daily basis, is very important when interacting in her day-to-day life. I’m the one who hears the whispers underneath her breath, I see what the naked eye can’t see when it comes to my daughter.
It’s different with sick kids. It’s 1000 percent different and one really can’t understand it, until you’re in it. It’s a club we didn’t ask to be in or ever want to visit. Momma’s who have diabled, sick or ill children, I see you and I know you too can see their “SOS” deep beneath the surface.
This is why I created a Facebook Page and website, dedicated to advocating, educating and getting people involved. Spreading awareness and helping others who struggle, not just in this area but to open your eyes to all kinds of struggle. I wish I had more time to dedicate to this blog, but I do know I’m helping and educating others as I feel called to it.
Teach Your Child to Advocate for Themselves.
I have learned to navigate and advocate for Ava, with doctors who do not specialize in her illnesses, school, and other things that directly impact her disability, physical and mental health. Which in turn has taught Ava to also. I do the grit work, read and educate on every aspect of Ava’s disease and illnesses inclduing her severe asthma, sinusitis, PI and AMPS. I listen and am present in conferences held by the TOP doctors who specialize in her illnesses. I ask questions, if something doesn’t sound right I use my voice. Many years ago I stood in a hallway outside of my daughters hopital room with 5 doctors telling me things that didn’t make sense or sound anything relatable to what was happening with my child and her medical history. Ava is a unique case. They had missed the mark with Ava over and over again.
That was the day my child asked me if she was going to die.
I then decided I would get every record there was on her in my own hands and educate myself on my daughters body.
Ava knows every medicine she takes, what its for and the important job for each inhaler to support her body. When given direction, espically during covid, Ava knows what her limits are in school with being 100% masked and when being in the presence of others -down to the detail. And she will not budge from knowing the how toos when it comes to protecting her health.
Ava is not like other kids and I don't believe she was ever meant to be. 💫
Kids with medical conditions and life threatening illness can't be held to the same standards. They are made to be different. For those fortunate enough have normal, healthy children, count your blessings. I know I do with my son. Those parents who walk in my shoes. If I can speak for us all, we simply ask for empathy, support and compassion. Because this road is hard, it can be lonely at times and us caregivers struggle too.
AMPLIFIED MUSCULOSKELETAL PAIN SYNDROME
A few months following Ava's Primary Immune Deficiency Disease Diagnosis, she was also diagnosed with AMPS which stands for AMPLIFIED MUSCULOSKELETAL PAIN SYNDROME. After a year of unusual patterns of pain, bone scans that look like fractures but weren't, her rheumatologist, Dr. Barron at CHOP gave us the news.
This week Ava’s AMPS is currently flared. She experiences PAIN from a scale of 1-10 at any given moment. It can be a screaming 10, to a 4, back to an 8 and she can't get out of bed at times or it can be tearfully painful to walk.
AMPS can attack anywhere in the body. It used to attack her head, to the point where brushing or even touching her hair and scalp was excruciatingly painful. Currently AMPS likes to attack her ankles and is now moving up to her knees. It showed itself after an IgG infusion last month, causing extreme pain and suffering, and again after today's infusion. It's awful watching your child suffer and there is nothing you can do to help. 😔
AMPS is caused by stress, illness or injury. With desensitization methods, multiple therapies like PT, OT, Stress therapy, and staying active, one can learn to manage the pain. This takes a number of years. Of course motrin and tylenol can help, and little tricks like peppermints help stimulate the brain. It's all pretty exhausting to keep up with. Just when you think she's in the clear AMPS rears its ugly head and sends my baby into PAIN. Which can change by the day, hour or week in a blink.
Understanding how a kid can have pain, then not have pain the next instant, can be very frustrating even for me, her momma. One minute she can’t walk and the next she is running and playful. I have to catch myself at times. But her pain is real and her pain tolerance is very high. Ava has been in physical therapy, stress therapy and sees a chiropractor. Her chiropractor, Dr. Dani realigns her body weekly, which brings her in full alignment with her mind, body and spirit. She also works on her AMPS flare ups as they occur and it helps. Last year Ava was in physical therapy abour three times a week to help with flareups. A flare up has no true tell signs of when its coming and how long it will last- days, weeks or more. The best way to work through it, is to get active and that can be difficult. Imagine if your ankle is screaming, but the way to tain that pain go away is to go for a run. Yeah, try explaining that to an 11 year old in severe pain.
KINDNESS, COMPASSION AND HORMONES
As a community, we are committed to raising our kids to always be kind, spread kindness like confetti and never judge others. To be great humans. You never know what is going on in someone's life, so no matter what- smile with your eyes and show others kindness.
The friend scene in 5th grade is pretty clicky and our school is very small. Ava doesn't understand it. "Why are girls in packs now, why aren't we all playing together?" She expresses often. Explaining to my 11 year old that different personalities tend to click more, kids may have things in common etc. Ava and her brother Chase flow a bit differently. They are a whole lot like their Momma, in the matter of... if everyone would just get along, mind boundaries and be respectful, the friend scene could be great. Unfortunately not everyone sees from that wide of a lens at such a young age.
Other girls speak poorly about Ava. They say she fakes her illness. She just wants attention, undermining her struggles and saying just plain "mean girl" things.
This makes me sad.
It saddens me that 11 and 12 year old girls' hearts are hardened, that they speak negatively of one another and give a side eye. I love children. ALL CHILDREN. In my life’s purpose and career to impact children's positivity and heart to see their own worth, their inner self and encourage them to see others’ worth too. We are all valued, loved and deserve to be treated with love and kindness, joy and happiness. If only we could always see though a child’s eyes.
Ava is a strong kid. Thankfully God blessed her with the strength to widen her lens at such a young age, and the maturity to realize when people act or speak this way this is a reflection of something they are feeling within themselves. Maybe it's because she hasn't had a choice but to grow up wiser in a sense due to her struggles. The saying goes if you have nothing nice to say, say nothing at all. I like to remind me and mine to let our thoughts touch our hearts before they reach our lips.
However, the negative digs directed at her by her peer, still leave a mark.
My children are not perfect. They are guilty of this in their own ways. They have asked me questions, complaints, “why does she get this and I get that.” They are no angels, there is conflict. We are all human. Our parenting response is to have deep conversations about these topics and plant seeds within them. As parents we are all doing the best we can. It's our job to educate ourselves and our children on paths we don't walk, on their classmates, on people who are different from them. Where there is tension, envy, "mean girl" talk- just saying "be kind" is not enough. Helping our children identify with themselves is the starting point.
YOU GROW THROUGH WHAT YOU GO THROUGH. TAKE THE LEAP TO LEARN.
When there is something or someone in your path that you may not understand. Step back and look at this as a challenge, a lesson, an opportunity to grow within yourself. Get educated on things you may never have heard of if you had never meant that person.
We are put in each other’s paths for a moment or a lifetime for so much more than what's on the surface.
We are put on this earth to enjoy life. To live joyfully, love and serve one another. Not be jealous, envious or speak badly about another. Each of us has our own road to walk.
Ignorance May be Bliss to Some, but a Lost Opportunity for Most.
Regardless of Ava's medical journey, her limitations will never stop her or be an excuse for her not to try. She is strong in every meaning of the word. And God gives his toughest battles to his strongest warriors. 💪
Ava pushes through most AMPS flare ups and her IgG days, but in those times and hard moments, Ava also needs to know she is seen. We are thankful for those who lean into those moments with us. Those who ask about how things are going, drop her a note of inspiration or just fill her bucket with kindness. 🙏 These covid times increase our reality, cautiousness and do hold us back from doing many things. When Ava’s brother had Covid for an entire month our whole house was affected not with the spread of the virus but mentally, emotionally and physically.
If anything, Ava knows "hope," how to find her zen (her center), how to be a light in others’ dark hours and how to lean on others for help.❤
As we pray for Ava’s health to continue to improve, strangers to donate their plasma, we also pray for others to widen their lens and hearts on others who are different from them.
Ava is beautiful, she's vibrant and thriving. She looks wonderful on the outside, but please remember her insides tell a different story.
She has a different perspective on life. With the guidance from her parents and older brother. The roads she has traveled and the souls she has met along her way. Ava Love chooses to experience the world through LOVE, even in those painful moments.
Seeing her life blossom through struggle has made me a stronger person, a better momma and unlocked my own voice, to speak in my truth.
My purpose for these blogs is to open others’ eyes. To take you for a walk through our journey, in support of anothers.
“Some may think one wears rose colored glasses at times, but we CHOOSE to live at a high vibration of love and joy always- because we have walked amougst many thorns.” - Aubrey L. Conley
XO, Aubrey January 9, 2021
To read more about AMPS:
https://www.chop.edu/conditions-diseases/amplified-musculoskeletal-pain-syndrome-amps